Tuesday, August 18, 2009

Two Steps Forward, One Step Back



Ugh. So much has gone on recently. Lots of good news! I went to my usual oncology appointment last Tuesday and my Dr. decided that my body is finally settling to a good place. My blood work looks normal (add squeal of delight here) and that the GraftVsHost has calmed down to a safe point. Safe enough to start decreasing my cyclosporin (anti-rejection drugs) and drop most of the other meds. My body should finally be able to take care of itself!

It was a bit of a sudden occurrence being taken off of so much so quickly. A bit shocking, really. I had mentally come to a point where I was just accepting that who knows when I would ever be taken off all that crap. Life saving crap, that is. I also don't have to go back to see her for 5 months! As I walked out of that appointment, I felt I was walking out a free person. I still have to have my bloodwork taken every two weeks to monitor my progress but that's okay.

To me the mental picture of this moment looks like a runner carrying a torch through the finish line. What a looong haul this has been. I feel a longer term of hope is seeping through to my consciousness. I can have bigger hopes now and longer term goals. I'm pretty damned excited.

I'm also exhausted. I've been pushing for my doctors to get to the bottom of why I don't sleep so that I can. Nobody can function or heal when they are severely sleep deprived. I had extra bloodwork done and they determined that I am severely menopausal. Severely! Many apologies to my sons for my moments of severe menopausal snarling beotchyness.

My oncologist explained that few people sleep through the transplant process which lasts a couple of months. Mine then probably switched over to chemically induced menopause which for me includes not sleeping. I hear many women close to or into their 50's complaining about the same things. Not fair at 36! Whatever, life isn't fair.

So my GP has switched me over to amtitryptolyne (probably spelled that wrong) to help with my sleeping and to get rid of all my body pain. I was quietly suffering from several types of pain 24 hours a day. Muscle pain, carpel tunnel, nerve pain arthritis etc. Well, just like magic it's gone! I can't even believe all that pain is gone. I also can't believe that I considered that much pain to be the least of my problems, in fact I barely even mentioned it to my doctors. I just thought I had to suck it up. My GP felt I had the body pain because I didn't sleep, therefore my body could not heal. The pain then in turn kept me awake.

Life really can change on a dime. I had been really hoping that my next spin on the dime would land me in a better place. I think I'm heading there.

Because of my night time medication switch I've been deprived of over a week of sleep because the amtitryptolyne takes 4 to 6 weeks to be fully effective. I'm about at 3 weeks now and it has been helping but I'm so tired I can hardly move. I've even gained almost 10 pounds :( That may also have something to do with the strawberry cheesecake slices I've recently discovered.

I feel like hell and have bags under my eyes again but I know that things are going to get better from here. Much better!

Here is the list of medications that are changing and/or have been dropped.

zopiclone for sleep - changed to amtitryptolyne
cyclosporin anti rejection - dropping and will be off in 3 months
fluconozole anti fungal - dropped!
valtrex anti viral - dropped!
septra protects my lungs from pneumonia - dropped!
pariet for acid reflux caused by my other meds - being reduced

prometrium for menopause - will always have to take it
estrogen patch for menopause - will always have to take it

Several people I know have said that I look like me again. They also say my energy has changed for the better. Hope shows.

11 comments:

Jens said...

You have not posted a long time. Now I see that the wait has been worthwhile.
Very good news!

Hurray!

BaldyLocks said...

Time slips by when you're too tired to function. I can't believe it's been so long since I last posted!

Snowbell said...

These are wonderful news! I'm happy for you :) And life will look much better once you've been able to sleep properly!

Caroline said...

Happy, happy good news! Its wonderful to get off meds... I have been on my thyroid medicine for 28 years so I guess its possible to take some things for life. I wouldn't mind getting off some of the other things. But glad to hear you had such a good check up!

Sara Williams said...

Good news about the meds! Bad news about the menopause! I should have had that by now with the chemo! However, I wont be able to take hormone drugs because of the type of cancer I have x

Distressing Delilah a.k.a. jenn said...

Congrats! I remember seeing your blog a long time ago and then sort of lost track of it! I am so happy to find it this way again!

hockeychic said...

So glad to see a post from you again! YAY about dropping/reducing some meds and yay, yay, yay about the body pain being gone! Lots of very positive news here.

Though I am so sorry about the menopause, that sucks.

Claire said...

I had never read your blog before. I am rooting for you and your newfound freedom. May you never have to fuck cancer or the horse it rode in on again. I had a really horrible day today, but remembering how bad cancer is puts it all in perspective.
Wishing you every happiness!

Charlotte said...

YAY!!! Good to hear things are heading in the right direction. I have been wondering how you were getting on and was relieved to see a new post.

Hope you get some restful, healing sleep soon xxxx

Anastasia said...

BaldyLocks,
I hear you on the sleep deprivation! Lack of sleep is not conducive to healing, that is for sure. I am glad to hear that medicine adjustments are showing positive results. :)

Lauren said...

YAY! That is such great news. Been thinking about you lots lately but every time I go to call it's seriously late at night. With your sleep issues I probably coulda and caught you awake. Great about all the dropped meds, and fantastic about the newly departed pain! Such wonderful news. Looking forward to hanging soon. xoxo L